Navigating life with autism in Dubai, UAE

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Tag Archives: special needs

Alright, so I’m back with a list of all things special needs-related I’m reading this week.

I’ve been interested for a while in the suggested link between diet and autism, and while this article’s usage of the word “cure” annoys me, it’s an interesting piece on how there are differences in the bacteria found in the intestines of people with autism, and those who are neuro-typical. It also suggests pro-biotic therapy as something that might one day be an option.

Media is also an important part of how the general community views people with special needs. This article is about a mother and other groups pushing for mediums like advertisements showcasing people with all kinds of abilities. I personally feel it’s going to be a while before this becomes “normal”.

An unfortunate set of incidents I often end up reading about are guardians/parents who end up killing their charge with special needs, and more often than not, kill themselves as well. In response to many people on the internet showing sympathy for the mom who committed the latest murder, Squidalicious has posted a succint piece on the matter. There’s also an audio discussion on the same issue.

This one is a short article, which I found interesting, about a 22-year-old who is pursuing research about the potential link between Down Syndrome and Alzheimers. It’s not a hypothesis I’ve come across before, so it’s interesting to see if this goes anywhere concrete.

There’s a piece that hit closer to home – about the ‘hidden community in autism‘. It’s the set of families that deal with the extreme end of autism – with the biting, the hair pulling, the tantrums, aggression, and much more. It’s not easy to manage, and can scare people if they haven’t seen it before. While there are instances in that post which are more extreme than I’ve ever seen, even Karan sometimes has bouts of tantrums/aggression that aren’t pretty. It’s draining – and I’m not even his caregiver! While the article talks about appropriate services, there aren’t the kind you’d find in the Western countries over here. I think it is important though, that extra help is given to caregivers, as they cannot be expected to look after the autistic person 24/7. Plus, I agree with the article that families with more severe problems get marginalised. Everything is “happy” in the media, but there are those with autism who aren’t going to live “normal” lives. Ever. But people don’t realise that. It frustrates me sometimes to see the side of autism in the media where people are “cured” (BAN that word in relation to autism FFS), where autistics get jobs and earn money and get married. Not all of them reach that stage!

But let’s finish off with this feel-good story about Joshua, who called 911 when his Mom had a bad fall, surprising everyone with his knowledge of what needed to be done. Just goes to show, special needs children absorb a lot of information, even when we’re not sure if they are!

Running a press release which I received about an event in Dubai this coming weekend, which aims to raise awareness about special needs kids and allows them to enjoy themselves in a relaxed setting while interacting with kids who go to mainstream schools.

Also, it’s Karan’s birthday on February 22 … so go celebrate! 😀

PRESS RELEASE:

TRIBE WATSON to Organize 7th Annual reaching you “party in the park”
(formally known as reaching you “family fun day”)

Dubai, UAE – 16th February 2014 – Under the patronage of HRH Princess Haya Bint Al Hussein, wife of HH Sheikh Mohammed Bin Rashid Al Maktoum, Vice- President and Prime Minister of the UAE and Ruler of Dubai, ‘reaching you’- a programme created to increase awareness and integration of children with special needs across the UAE- will be holding its 7th annual Party In The Park (formally known as ‘Family Fun Day’), at the Mega Bowl, Zabeel Park on the 22nd of February 2014 from 12:00 until 18:00.

A complimentary day full of festivities, the reaching you “party in the park” is committed to providing a relaxed environment for special needs and mainstream children to interact and enjoy a fun filled day of activities, merriment and health.

“We see health and fitness as a key element in enhancing children’s lives and integrating them into their community,” said Nick Watson, Co-Founder of TRIBE WATSON and reaching you. “As such, we wanted to create a worthy cause, which encouraged this involvement, sharing with parents and the UAE community the wonderful joy this can bring to children of all abilities.”

“In Dubai alone there are over 6000 children with special needs, however caring for them is not always at the forefront of people’s minds, thus events like the reaching you “party in the park”, help in bringing us all together,” said Mr. Watson.

In its 7th year and expecting over 5000 visitors, the reaching you “party in the park” promises to be a fantastic day full of activities including – DJ’s, bouncy castles, obstacle courses, climbing walls, Dubai Drums, art work, puppet shows, theatrical shows, games as well as face & henna painting – delighting children in this renowned family affair.

“It is my personal belief that every individual has the right to receive the necessary support needed to live as a member of the community and benefit from experience and social relationships. reaching you and its various initiatives are a perfect way to achieve this,” concluded Mr. Watson.

Nick and Delphine Watson are parents of Rio, their beautiful boy who has special needs. Inspired by their own experiences, in 2006 they were motivated to establish the program reaching you, using their own understanding and appreciation for the cause, as the currency for their success.

When I saw this post, I started thinking about those who deny the existence of special needs in their children, and withhold from them the opportunity to get any therapy that might be needed.

I’ve come across those who are offended at the idea that their child might have “something wrong” with them. I’ve come across others who find the suggestion laughable: “My child? Special needs? Haha, what nonsense!” and then, there are those who just behave as though everything is fine and blankly ignore any suggestions from well-meaning others to perhaps get some help? When people say: “I can’t believe her teacher/doctor/whoever said we should get her checked for <insert whatever special needs term you like here> … I mean, she’s just a little different, but that’s no reason to label her!” I’m not sure what to say … what’s wrong with getting your kid tested?

And what is this stigma attached to special needs? The concept that people who are differently abled from the majority of the population as being “lesser” than everyone else is revolting. Sure, not all those with special needs are geniuses…but they’re pretty cool anyway. Just like you and me.

I wish parents would understand: if there is even a small chance your child has some kind of special needs, getting help is not a bad thing. Labels mean nothing nowadays. Labels are what you make of them. IT’S OKAY if your kid has autism. Or Down Syndrome. Or Fragile X. It’s going to be difficult, sure. But the “label” is not going to ruin anyone’s life. Not unless you let it.

I’m not even saying to go with one opinion. Take two. Or three. But if everyone says the same thing, get help. Please. Don’t ruin your child’s life by being too late.

I’m ashamed to say I’d nearly given up since then. I know people, on more than just an acquaintance level, who say “retard” all the time. I tried with a few, but they just don’t change. They promise they won’t say it, but then they do. I feel embarrassed that I’ve given up because every time they say the word, I cringe. I cringe and I don’t understand why they use it. I cringe and hate myself because I feel like I’m letting Karan down by keeping quiet.

I said a lot last year about how it hurts. But this video from Love That Max says a lot more. I did shed a few tears when I saw this, because instead of Max, I kept seeing my brother, Karan.

I need to have a fangirl “SSQQQQQQQUUUUUUEEEEEEEEE!!!” at this point. Last night, while skimming my Twitter timeline, my eyes got stuck on a tweet that had the following words:

“Hey girl” … “Ryan Gosling” and… “SPECIAL NEEDS”

*click click click*

WORK FASTER, INTERNET SPEEDS, DAMN IT!

I absolutely love it! Created by Sunday Stilwell, the mom behind the blog, Adventures in Extreme Parenthood, there are currently two blog posts I can find with this meme. These can be found here, and here.

I leave you with one image from her blog…one of my favourites. Please, please click on the links and read the rest…if you deal with special needs on a daily basis, you will identify with them. And looking at Ryan Gosling doesn’t hurt either 🙂

Not many people understood. “I’m taking two weeks off from work in December,” I said. “Oh where are you going?” they asked. “Nowhere,” I replied. I was staying in Dubai and planned to spend these two weeks off looking after Karan while my parents went to India. It was hard as it was to get my Mom on the plane to be honest. “I’ll be more stressed out leaving you two!” she said to me. Go, I told her. I kept forcing her. Telling her that once she went, she’d have so much fun she’d want to leave us all the time.

Bear in mind my brother was born in February 1996, and this was the first time in nearly 16 years she has left him alone for more than a few hours. Nearly 16 years without a break. Let that sink in your brain before we move on.

She pleaded me not to tweet/blog about her trip while she was gone (because she didn’t want anyone to know it was just Karan and myself at home). So I didn’t. But I recorded my experience during those two weeks and now that she’s back, I’m going to post them as my insight into trying to truly be Karan’s primary caregiver, house-runner and general all-round superwoman (that’s her, not me…I was just trying!).